• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Undiagnosed but well-adjusted after 1.5 years.

Hello all,

I finally decided to join this forum after looking at various parts of it over the years in my search for help with my issue. This all started for me 18 months ago.

It was a stressful time in my life in which I dealt with tremendous anxiety from time to time. I had finally decided to ignore my anxiety and just let the anxious feelings "sit there". I say that because this is the only time in my life that I have ever done that and I suspect it ties into why I deal with this.

Back in August of 2014 I was out with some friends for dinner at a restaurant. I had ordered pasta. Half way through the meal, I begin to feel ill and tired. I told my friends politely that I needed to go; something was wrong. As I drove back home I started freaking out because I felt all of these weird sensations in my abdomen all over the place; I thought I was possibly dealing with appendicitis. I had noticed a few minor feelings in my abdomen in the preceding weeks but nothing like this. I had never been majorly sick in all my life and hadn't been to a doctor in more than a decade - I didn't have what I now know as a "primary care physician" or anything like that. I was clueless about doctors or hospitals. So I decided to wait it out and see if it would go away. I mostly kept up appearances around my friends and at work as I writhed in pain on the inside. I thought that stopping eating would help but it really made no difference. Whatever I had was lasting much too long to be traditional appendicitis. I had a pain in my lower right abdomen that felt like a metal rod was sticking out of me. And the pain NEVER went away. It was there when I ate, there when I slept, there when I took a shower, etc. It would lessen at times but it was always there. And then there where the weird bowel movements that never quite looked right, and eventually went dark and sometimes included red blood which freaked me out. The fatigue embarrassed me at times because I might be walking with someone and have to explain to them I need to stop because I felt dizzy and like I am going to pass out even though we were barely walking 100 feet or so.

Several months into this I wondered if it would ever go away; it was hard to go to work each week with that writhing pain on the inside of me that I had never felt before in my life. I felt like my insides were being eaten away. I dreaded having a bowel movement, and I hesitated to eat at times. I also had what I called "phantom fevers" because it kind of felt like I had a fever but my temperature was always normal when I checked. I finally caved and went to see a doctor. He looked at me and ran some urine and blood tests and found nothing out of the ordinary - I could use a little more vitamin D but that was it. Then I had a sonogram, and a CT scan (with and without barium). The doctor said my insides looked "completely normal". That's when the doctor then wanted to open me up surgically and look inside, for the price of about $5k - no thank you! (my health insurance deductible was $5k). I figured my issue wasn't that bad even though it made me miserable.

I tried taking marshmallow root but it didn't seem to have any effect. I also took boswelia and that didn't seem to do much either.

I was determined to live a normal life. I even went on a major hiking trip that I planned before feeling this way. I wasn't going to let this disease (whatever it was) ruin my life. I normally felt miserable enough to avoid hanging with friends and I felt like I would pass out when I was at those hard chairs at restaurants. But I was not skipping that trip! I ended up having a good time and my disease noticeably lessened after that trip and has never been as bad since then, but it was still there. And we roughed it out there - I had nothing to eat but MREs and nuts for days. I was relieved that primitive bathroom stations actually existed where we were, so no digging holes for me!

Then I did more research - lots of lots of research of ANYTHING that would lessen the pain that I could get without having to see a doctor. I'll skip the details but once I figured out what to take, 1) the pain went away completely!! 2) I was able to eat *basically* whatever I wanted again! 3) the constant fatigue and tiredness went away! 4) I almost entirely stopped seeing blood or dark stuff in my stool!

I read a post on a forum (not sure which one) that really encouraged me when the guy said taking XYZ natural pills got rid of his ulcerative colitis completely!

So now I live a normal life again. I am active, I eat whatever I want (some exceptions, but nothing I really miss anyway), and I can socialize and sit in restaurants without feeling like I am going to pass out. I also don't dread going to the bathroom and I don't see any blood in my stool unless maybe I eat something bad or stop taking my pills too long.

I have to take my pills everyday, if I miss a day I will be OK, but after a few days of not taking them I start to bleed again and the pain comes back.

Here is generally what I take every day (they are all-natural with no doctor prescription needed). I take most of them during lunch:

3 Boswelia pills - apparently this works as an anti-inflammatory. I honestly don't know if this has much effect on me but I take it anyway since I read research that it works as good as prednisone (which I hear they prescribe for IBD) without the side effects of steriods.

2 or 3 Bromelain pills - this comes of the core of a pineapple and also works as an anti-inflammatory. This is the pill that takes away my pain! It also helps me digest protein. I don't know how it works entirely but I know it works for me!

2 Enzymedica Digest Spectrum pills - a family member suggested I take this. While I don't know if it helps my disease much, I did notice that it takes away that lingering nausea I had when I would eat.

2 Fish Oil pills - I hear they're good for IBD-type stuff and I saw no reason not to take them.

2 Slippery Elm - this is one of the important ones that I sometimes forget to take since I take it separately from all the others (I hear it may decrease absorption of other pills). This is the pill that stops my bleeding. Apparently it coats my insides like a mucus-substitute. If I skip this for like two days I will start bleeding again (not a lot, but anytime I see blood on my tp it wierds me out).

Thankfully, after taking these pills on a regular basis (took me a while to get into the habit), I live a normal life again. I avoid eating certain items like beef jerky and highly processed foods since that seems to aggravate things (I never really liked those anyway). I also avoid eating certain types of muesli (a breakfast food like cereal) because it seems to cause me to bleed - perhaps due to the tiny nuts and hard things in it. I like spicy food and I have not had to quit that - I even eat ghost pepper sauce! I work out and exercise. At one point I got into what was probably the best shape of my life, all while in the middle of this horrid disease! I could bench about 1.3 times my weight. Now it is probably less since I no longer have my home gym.

I am sure my coworkers at work wonder what this guy is doing pulling like 10 pills out of his pockets and taking them every day at lunch but oh well, I am pain-free!

Every few weeks or so I see a bit of red blood on my tp and I am reminded that I still deal with this thing (and then pop a few slippery elm pills - they are food grade btw). I believe that at some point I will be over this entirely. I don't know how, but I believe I will.

I know everyone's issues are a bit different, but I hope sharing my story can help someone.

Kind regards,
-Nick
 
I am glad you are feeling better. There might be damage going on the inside of your body that you are not aware of.
 

fuzzy butterfly

Well-known member
Hi and welcome to the group, how ever you manage your disease, and what helps you is fine of course. I do however recommend that you have regular check ups with your doctor just to make sure that all is well internally and no inflammation is occurring that you are unaware of. Also keep your doctor informed of what you take to help you. I hope you can keep feeling well. Best wishes 💖
 

David

Co-Founder
Location
Naples, Florida
Welcome to the forum. I agree with the others. Your symptoms might be masked but the presence of blood tells us there is potentially inflammation. If you do have IBD, you're going to be in for a hell of a ride if that inflammation isn't properly dealt with.

Also, in my opinion, Enzymedica Digest Spectrum pills are complete and absolute junk and I wouldn't feed them to the cockroaches in my kitchen I'm trying to kill. But to each their own.
 
Top